prairiewindmomma Posted January 23, 2020 Share Posted January 23, 2020 Scarlett—Autoimmune disease also commonly affects heart and lungs, especially if it has been badly managed. When she got the PA diagnosis, a rheumatologist should have given her a heads up and been monitoring all of that closely. Instead they seem to have been hyper focused on the skin symptoms of a body wide problem. The two issues above are also associated with other problems not in the AI world. I would expect that as they begin to peel back layers of her problems they will discover more issues. 🥺 1 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 23, 2020 Author Share Posted January 23, 2020 36 minutes ago, prairiewindmomma said: Scarlett—Autoimmune disease also commonly affects heart and lungs, especially if it has been badly managed. When she got the PA diagnosis, a rheumatologist should have given her a heads up and been monitoring all of that closely. Instead they seem to have been hyper focused on the skin symptoms of a body wide problem. The two issues above are also associated with other problems not in the AI world. I would expect that as they begin to peel back layers of her problems they will discover more issues. 🥺 Rheumatologist saw her one time and said he didn’t need to see her again, this all makes me so angry. 2 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted January 23, 2020 Share Posted January 23, 2020 I really, really want the Medical establishment to establish Autoimmune specialist and clinics and practices. I see a pulmonologist for my asthma, an allergist for my allergies, a rheumatologist who basically only wants to deal with joint issues but at least she is good with dealing with that and also with monitoring for other issues that would require other doctors like kidney or liver specialsits. and a neurologist to deal with the neurological symptoms. My dermatologist checks me for cancers and answers any questions I have about my skin symptoms- I have both exczema and several different rash types from lupus. I do not go to a urologist anymore but was also diagnosed with autoimmune interstitial cystitis. i also have seen an ENT too and really should go back to him. My primary care concierge doctor deals with acute illnesses, pain meds, yearly comprehensive physical with short ekg. monitoring of blood flow, physical exam by him, and blood and urine tests- which include diabetes screening, and special tests for heart health, along with vit D, thyroid tests, etc. Oh and my blood thinning levels are monitored by the Coumadin Clinic. Plus I am now going to Pt to help me not fall- but I did fall two days ago again. The one thing I have learned and have tried to teach my children= You need to be responsible for your own health. Learn all you can about your conditions and keep up with new discoveries. 1 Quote Link to comment Share on other sites More sharing options...
geodob Posted January 23, 2020 Share Posted January 23, 2020 Scarlett, the HLA-B27 antigen is associated with various Heart problems. For example, it can cause abnormal electrical signals. Resulting in a slower or faster heart rate. It can also cause inflammation of the Aorta, which can distort the shape of the aortic valve in the heart, impairing its function. HLA-B27, is gene that produces a Protein. But their can mutations of the gene, which causes incorrect Proteins to be produced. The mis-formed Proteins, enter the blood-stream and are spread throughout the Cells of the entire body and head. Where it is identified as 'Foreign Antigen' and attacked by the immune system. It has been associated with over 100 different 'disorders/diseases'. Fortunately if the HLA-B27 is producing these Antigens? They can be identified with a blood test. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 23, 2020 Author Share Posted January 23, 2020 She is having heart cath as I type. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 25, 2020 Author Share Posted January 25, 2020 23 minutes ago, Seasider too said: Any update? No blockage. She left the hospital last night but per her doctors request stayed nearby until at least today. She has to go back for doctors appointments next week.....she is thinking of just staying in town until then. 1 Quote Link to comment Share on other sites More sharing options...
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